FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Saturday, January 31, 2015
My offer stands and if you don't get to Evanston I could meet you downtown your place of work. Your decision to have mom move to a new living situation is a good although difficult one. Difficult especially since she doesn't seem to like the idea.
One suggestion, if she is able, let her make some of the decisions like what furniture, photos, decorations etc to take and how to arrange her new space. I have found that while Gregory was not "hostile" to the new surroundings, he has come to enjoy his new room and home.
The activity going on around him, even though he cannot always fully participate, the good food, and new friends have helped him remain happy and calm. It is touching to see Gregory and Martha carrying on a conversation at dinner. They they both are enjoying it immensely but anyone listening realize that what they are saying makes no sense to others but G and M are having a great time.
Also, by his being in a safe, loving environment, the time I spend with him is free from all frustration, anger, fear, and exhaustion. I actually enjoy visiting him and the other residents have become part of my extended family. Lets get together and chat if you would like.
Friday, January 30, 2015
Wanda is a Lieberman Life Activities Director and Blanch is a resident on one of the Lieberman assisted living floors.
Gregory's paintings, from a show in the Lieberman lobby, will be up until March 1. Blanch approached Wanda about buying one of Gregory's paintings for her room and wondered how much it would cost.
The important part of buying the painting, Blanch told Wanda, is that you can clearly see God's face in that painting. Wanda studied the piece but could not see the face until Blanch pointed out the details. Now Wanda can see the face.
I am not sure if I want to see the face myself but was happy to offer Blanch a special "Resident Only Price" of $10.00 for the painting. She was overjoyed and will drop the money off at the front desk and get her painting today.
So much of life still goes on at Lieberman.
Saturday, January 24, 2015
When I arrive at Lieberman to see Gregory, he lights up and smiles and is happy. We hug and kiss or give a forehead "boink" as Gregory calls it. And I am happy.
Some days if he is not feeling well or is sleepy he has a hard time focusing on me having arrived. Still I hold on to my joy and refuse to revisit or seek the past of who we were or what we have been through, good or bad.
The staff always are cheerful and enjoy my greeting or send one my way first. I always make sure they know how much I appreciate them and what they do for Gregory as well as all the residents under their care.
I can reach out and offer my hand to one of my many family/friends/residents at Lieberman. For a number of them, my presence or arrival evokes a smile, a wave, a nod, a salute.
For others, a touch can mean so much to someone for whom outside stimulus is not readily available. A smile sometimes evokes a smile returned.
"How are you today?" I ask and usually get a smile or an "OK." If the answer is "Not so good." I can empathize and hope that tomorrow will be better.
But mostly, the residents are not too down and do not obsess. For some however, obsession and/or negativity is the way they interact with their world and maybe that is "OK" too?
The simple act of snapping a napkin around Martha's neck, cutting up Batia's food, offering to help feed Harun (with the usual "FUCK YOU!" You are dirty!) all bring joy.
How hard is it to make a peanut butter sandwich for Bill who usually doesn't like the day's offering? What does it take to tell Gerri that her son Howard says hello and sends his love and when asked where he is, fibbing that he is still at work?
Every time I get off the elevator, Mini is sitting there. Every time she asks, "Who are you?" "Why are you here?" "Where do you live?" "When is dinner." These is the only conversation I have had with her. Mini is 100 years old.
Betty's favorite comment is: "I want to go to my room." or "I want to go to bed." The usual reply is "OK. Why don't you eat a little more dinner and then you can go to bed." Sometimes it works. Most of the times brings, "I don't want it. I want to go to my room."
When one of the residents asks for help it is safer to refer the request to one of the Resident Care Associates. I've learned that there are some requests I can fulfill like bringing an extra napkin or getting more juice (making sure it has the correct level of thickening for that resident.)
A common request in the dining room or while watching TV in one of the wings, "I want to go to the bathroom. Or "Take me out of here." I have learned to offer, "You're next. The helper will get you next." It usually works and works fairly well because the element of "time" and/or "next" doesn't really exist for many of the residents.
Some of the family/friends/residents are so far progressed with their dementia that they are not at all present but I find that sometimes a "Hello" or touch does make a connection. I keep trying.
These are just a few of the opportunities that present themselves. And I am grateful for each interaction. I enjoy being with Gregory at Lieberman and look forward to my visits.
Friday, January 23, 2015
Today I went to Liberman at the crack of dawn, which for me means leaving the house at 9:00. Katharine, the Lieberman Art Therapist and I scheduled a session with Gregory in the Art Lab to see what he could do with finger paints.
You are reminded that three or four years ago he picked up oil painting as a new hobby, under the mentorship of Nancy Rosen (http://www.nrosen.com.) He took to it like the proverbial fish to water (ironically he used to refer to himself as a fish who needs to be in water, thus swimming as often as he was able in the pool in our condo building.)
In the three short years he worked with Nancy he produced over 200 pieces, mostly large 25"x25" and 25"x35", and some smaller 10"x10". He had a show at the Lincolnwood Town Hall Gallery which was very well received and most recently a show at Lieberman in which most of the 26 paintings sold!
Since he moved to the Liberman Center he has continued to decline and has lost many more skills: like painting and swimming. But he doesn't seem to mind and continues to live as he always has with a calm demeanor.
I, on the other hand, was not as ready to let go of his painting. So I purchased thick primary crayons and colored pencils and tablets of paper. To no avail.
I found ergonomic crayons that you could grip with your fist and which were thick enough so as not to break under pressure. To no avail.
I discovered another type of crayon which you can "wear" on each finger. Picture cone shaped crayons into which you insert your finger. To no avail.
Still not giving up I purchased a box of tubes of finger paints and a large tray in which sits the finger painting glossy paper. Today that was put to the test.
Gregory was very pleased to see me and we greeted each other with hugs and kisses which is the usual. I told him that, "We are going to go paint. Would you like that?" He got very excited and gave me a chain of "Yes. Oh my. Wonderful. Wow."
On the way to the elevator his upbeat joy continued and I felt buoyant but also filled with a little dread that finger painting wouldn't work either. I put this feeling aside in the name of "If at first you don't succeed, try try try."
We got him into a silly painting apron and while Katharine went to look for large playtex gloves, Gregory and I reviewed the colors of the tubes of paint. He actually repeated after me for PURPLE, GREEN, and PINK but then stopped mimicking. He does that. He is good for the first few but then he "turns off."
It wasn't as hard to get him into the gloves as I thought it would be when we first began. He did not resist and that was good.
The reason we used gloves was not only because it would be easier to clean up his hands afterwards, but I remembered that when he was working with Nancy he hated it when his hands got dirty from the oil paints and she had to help him wash many times during a painting session.
At first Katharine and I demonstrated and encouraged. Then we put his hands through the motions. Then a small (LARGE) miracle took place.
He was actually focused on the sheet of paper and the blob of paint (he usually has trouble focusing but this time he was on task.) He began to move his hand around through the paint spreading it up and then down.
Next he began tapping his finger on the paper and noticed the colored design his tapping created.
He was having such a good time and he was really engaged with the process. Of course if it was you or me we would jump in at 9 or 10 on the finger painting scale while Gregory was woking at the 2 or 3 level, but he was working and that was wonderful.
Periodically we had to ask Gregory to pick up his head, or open his eyes, or refocus on the paints and paper but he really was enjoying himself and continued to be engaged for close to the entire 30 minutes.
I sobbed but didn't want to distract Gregory so turned it into a cough. I think Katharine noticed and I think she was as overjoyed as I was. We worked at this for about half an hour with pink and green and purple and blue and yellow.
When asked if he would like to paint again he definitely answered, "YES." So we have another play date next Friday. At that point I'll share some photographs of the process and the product.
Meanwhile, shed a finger paint tear or two with me at the joy of having been able to give this experience to Gregory. Celebrate Katharine for her patience and perseverance that payed of for Gregory. Thank Lieberman for being perceptive enough to recognize how important the arts are for all of their residents, even those severely at risk due to dementia.
Tuesday, January 20, 2015
This is so true as I watch Gregory shine brighter than bright.
Monday, January 19, 2015
Friday, January 16, 2015
Yesterday spending lunch time with Greg. He was in a great mood. Telling jokes (least the rhythm of his phrasing sounded like jokes), cracking me and himself up.... He let me feed him soup, burger, potatoes and apple crisp. I'd say his appetite has definitely returned!
I love when Greg grabs for my hand. Does he know who I am? Sometimes, it seems that way but, most of the time, it doesn't matter. I just love being with him. Always reminds me that our presence is enough. We don't have to be anything else than just here… just us.
Thursday, January 15, 2015
101.7 fever. Nauseous. Runs. Slept all day.
Susan, dear old neighborhood neighbor and friend covered lunch and Pat, dear new friend and Gregory aficionado covered dinner. Susan's comment was, "I just love when he reaches out and holds my hand." Pat's comment was, "I have not made such a mess since the boys were in high chairs. Too much round food!
I share this with you for several reasons. First I am grateful to my family of friends for their being available to support Gregory when I am not able to.
Also, for those of you who are caring for a loved one, do not be afraid or embarrassed to ask family and friends for help. You will find that if they can spare the time, do not have to work at that time, or do not have previous unchangeable plans; they will be at you side to support you and your loved one!
I have noticed that this year I have been getting ill more often. Upper respiratory, flue,colds, just not feeling up to par.
My niece Colleen, noting that visiting Lieberman Center is kind of like living in a Petrie Dish, suggested I start using Kiefer, a pro-biotic beverage. Probiotics are live bacteria and yeasts that are good for your health, especially your digestive system.
We usually think of bacteria as something that causes diseases. But your body is full of bacteria, both good and bad. Probiotics are often called "good" or "helpful" bacteria because they help keep your gut healthy.
In some ways she may have had an important insight. When at Lieberman I am with a population of residents who are easily prone to getting ill due to their age and their stage of dementia related diseases.
I am very hands on with my "new family" as I greet them, help them at meal time, push a wheel chair around the corner to the TV room, smother Gregory with kisses . I try to sanitize when I leave but what about all that time I am there?
I remember that when I began teaching, I was ill most of the first year because of the "petrie dish" that is a classroom filled with 25+ children.
THANKS COLLEEN. You are appreciated!
Saturday, January 10, 2015
This video contains, from Plum Village and Thich Nhat Hanh, a song/chant that has become Gregory and my theme song. The first two lines talk of Gregory's being free and the second two lines talk of my being free.
Friday, January 9, 2015
Wednesday, January 7, 2015
1) I dealt with not sending Gregory to ER when his fever would not break even though the doctor though I should.
2) I thought about under what conditions I would use ER.
3) I revisited Gregory and my previous conversations about "no heroics, do not resuscitate, no inadvertent prolonging of life."
4) I made the decision to apply for Hospice (which while dealing with end of life does not mean that death is just around the corner.)
I am aware that all of these dealings are easy for me on an INTELLECTUAL level, but then the EMOTIONAL level creeps in and I cry, and sob, and want to get hysterical and scream and rend and smash.
While I enjoy being with Gregory and am able to love him as he is today, in his world, I also know that I do not want him to "stick around" for my benefit and I know that his condition will continue to get worse.
The separation will not be easy but I know that I will get through it. I also know that while I can decide, via Power of Attorney over Health, what measure will be taken; I cannot decide when his life will begin to end. That is his job and the universe which watches over him.
So getting to the point of this post. It is not easy making these decisions on Gregory's behalf. The first thought that came to mind was what "Extreme Trust" he has placed in me to make these decisions.
Then a second through quickly replaced the first, which helps explain why these have been emotional times for me.
The EXTREME TRUST is that which I place in myself to be able to make these decisions on Gregory's behalf!
"Write everyday if you want to consider yourself a writer." Sit down and write about whatever comes into your head. Use writing motivations to help you get started. Write non-stop for ten minutes about whatever you are thinking about. But that doesn't always work.
For me, writing is a way of processing my life. Understanding it. Sitting with the difficult emotions that arise and seeing what they are telling me. Laughing over the amusing funny things that happen. Wondering about what I see and perceive around me. Thinking about and planing creative ventures and projects.
I was worried about getting through the holiday season this year since it was going to be the first Christmas and New Year's that Gregory and I did not celebrate together in forty years. But then I got to thinking about what a good (relatively) place we are in today compared to the hell our life was last year BL (Before-Lieberman.)
Also, I was able to celebrate with Gregory, just in a different way. I had my meals with him in the Lieberman dining room, we opened gifts, we had a Christmas tree in his room, we watched our usual holiday videos.
So now we are in a new year, a time of resolutions, a time of plans, a time to move forward. But can I do that when in many ways I feel like I am still "on hold" with Gregory as he continues to change and decline.
I visit almost every day for an hour or two and that cheers me up. I am in the process of signing up for Hospice for him which feels empowering to be able to control that part of the future which I am able.
But when I am home I am lonely, miss him so much, and feel lethargic finding it is easier to not face my creativity, my projects, my day to day life maintenance. Gregory is still a very large part of my life and my focus. I am happy that he is still with me and that he is content, happy, safe, well taken care of.
So you can imagine that most of my writing is directed towards my Alzheimer's BLOG.
But what about me? Maybe another year will help me feel more my new self and help me get on with life. Maybe another year will help me realize those many projects I have created for myself. Maybe I'll get back into being a Supernumerary for the opera, Ringmaster for Michael's Flea Circus, Curator of a second museum The Small, Writer, Poet, Public Speaker? Maybe I will slowly get used to my life without the old Gregory, the old relationship, the old times together.
Or maybe I'll just continue to post more often on the Alzheimer's BLOG for now and see how life unfolds for me without too much pressure, too much fear, too much regret, too much frustration, too much anger. Maybe LIFE will sneak up and before I notice, I will be the new me?
Sunday, January 4, 2015
Friday, January 2, 2015
Thursday, January 1, 2015
Gregory chatting with table mate Martha caught in a video by Manny.
G: "Mumble, mumble, mumble, mumble."
M: "No you have to talk if you are going to speak." Sigh, "Oh what would you have to say anyway?"
G: "No, mumble, mumble, mumble, mumble."
M: Look of exasperation.